By now, eight years later, after so much debate over his sister's situation - her diagnosis, her prognosis, her wishes, her autopsy - one thought remains dominant for Bobby Schindler: Terri Schiavo deserved to live.
Schindler now heads a growing foundation to help others in similar situations. Every year since her death, they've held a "Terri's Day" of remembrance.
This year, the Terri Schiavo Life & Hope Network has moved from Florida to the Philadelphia area, where both the Schindler and Schiavo families are from, and the event has grown.
At 5 p.m. Friday, Archbishop Charles J. Chaput will celebrate a Mass dedicated to Terri Schiavo at the Cathedral Basilica of SS. Peter and Paul. Sarah Palin will speak afterward at a fund-raising dinner at the Philadelphia Marriott Downtown. A ticket is $150, and 350 have been sold; $25,000 gets you a visit with Palin, but no takers so far, Schindler said.
Terri Schiavo died March 31, 2005, after 15 years in what doctors termed a persistent vegetative state. Her case was marked by an excruciating public family battle that traversed the courts, prompted an unprecedented session of Congress, drew the attention of the Vatican, and inspired countless Americans to complete "living wills" spelling out what care they did - or did not - want in the event of severe injury or illness.
Her husband, Michael, said she would not have wanted to live this way. Her parents and siblings said she would have chosen life, no matter what.
It is a decision that daily is facing many families, although rarely in such a public arena. Mostly, it's in a hospital conference room with a box of tissues on the table.
'Strong obligation'
Most people - 85 percent to 90 percent - say they would not want to be kept alive in a persistent vegetative state. But when they're deciding for another family member, it's a different story.
"Many families feel a strong obligation to keep a family member alive," said John HansenFlaschen, head of pulmonary and critical care at the Hospital of the University of Pennsylvania.
Often, the simple act of a finger that moves or an eyelid that flutters gives them hope, however faint.
But fiscal concerns are real. "If you ask the question, 'Do you want your money to go to this?' most people say no," HansenFlaschen said. "But if you ask the question about individual rights, people say yes."
He thinks most people don't have a problem with a family caring for a patient in a persistent vegetative state at home. But if the patient is in an acute-care hospital like HUP, where the beds are always full, that amounts to a person who likely will not get better blocking access for a person who likely will.
In the extreme cases where the family wants a persistently vegetative patient who is dying revived, Hansen-Flaschen dislikes the often-invasive measures necessary - "poking holes in people, breaking ribs, causing bruises. It feels very unnatural and wrong to be doing violence to such a person."
Meanwhile, in the nearly 25 years since Terri Schiavo first collapsed, this area of medicine has "changed dramatically," said John Whyte, director of the Moss Rehabilitation Research Institute.
Recovery of consciousness is happening more often than long believed. "There is significant long-term disability," Whyte said. "But in general, the prognosis is more positive than many people thought."
New treatments also are showing promise. Zolpidem, a sleep drug, has helped some in vegetative states regain consciousness, if only for hours. It's no magic bullet, Whyte said. "But it shows us that not everyone who is vegetative," even for a long time, "is irreversibly vegetative."
Schindler, 48, a former math and science teacher in Florida, thinks many patients are being warehoused. Last year, the foundation established a Center for Disability in the Public Square - a data-gathering and information-sharing network. In his office, he has a sketch of a rehab facility he would like the foundation to build, although he concedes it is likely a long way off.
The foundation, begun in 2000, has seen its revenue grow steadily, from less than $20,000 in 2005 to nearly $700,000 in 2011.
That year, contributions were bolstered by a $100,000 prize from the Gerard Health Foundation, a pro-life philanthropy in Natick, Mass., that praised the Schiavo network for helping 1,000 families, and giving them "safe haven amidst the pressure of the so-called 'right to die' movement."
One of them is Sara Harvey, of Horseheads, N.Y., just north of the Pennsylvania line. She has been battling officials over her husband, Gary, who has been in a persistent vegetative state for nearly seven years, after falling down steps and suffering a traumatic brain injury.
A judge had named the county Gary Harvey's guardian in 2007, and in 2009, officials planned to remove his feeding tube. Sara Harvey contacted Schindler, who has petitioned the court to name him a legal guardian.
No decision has been made, but Sara Harvey credits Schindler with saving her husband's life so far. "Bobby's like an angel over my husband."
Schindler said the foundation often can steer people to legal help and other resources. But "sometimes it doesn't work out."
"People call us, and they think that all we have to do is pick up the phone and stop something," he said. "I have to remind people, we lost. We weren't able to defend Terri."
An analysis by the nonprofit clearinghouse GuideStar shows that in 2010, the network dedicated only 40 percent of its spending to program services. Nearly half of expenditures went just to fund-raising, a percentage that dismays Schindler.
'Always a struggle'
"I wish there was more to show for it," Schindler said. "Fund-raising is always a struggle, because of the apathy out there. . . . I hate the amount of time I spend to raise funds."
In 2011, the foundation spent nearly $46,000 on travel. Schindler said he often attended 20-plus events a year.
Documents for 2011 list three key employees and their pay: Schindler got $47,062; his mother, Mary, the office administrator, $23,250; and sister, Suzanne Vitadamo, the treasurer, $39,042.
Terri's father, Robert, died in 2009 - brokenhearted that he was unable to save his daughter, Bobby Schindler said.
Schindler believes that questions about the value and quality of a life will only grow, given medicine's increasing ability to keep people alive, despite serious injury.
When the autopsy came out, showing the extent of her injury, he thought people used it as a justification for her death.
"To justify ending the lives of these individuals, we focus on the extent of the injury," he said. "Where in that continuum of brain injury does it become OK to kill them?"
He thinks people like his sister are "blessings." How we care for them "is a way of testing us, a reflection of our culture."
Contact Sandy Bauers
at 215-854-5147 or sbauers@phillynews.com, or
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at www.philly.com/greenspace.
WALL STREET JOURNAL, Thursday, February 26, 2015, Page A17, OPINION:
WALL STREET JOURNAL, Thursday, February 26, 2015, Page A17, OPINION:
Jeb Bush Was Right to Try to Save Terri Schiavo
The ‘right to die’ lobby is trying to tar him for his efforts on my sister’s behalf. If only he had succeeded.
In Washington, D.C., during the 2005 legal battle over Terri Schiavo’s fate. PHOTO:GETTY IMAGES
The usual media suspects are excoriating Jeb Bush —again—for trying to help save my sister Terri Schiav o’s life. An article last month in the Tampa Bay Times, “The Audacity of Jeb Bush,” later quoted in a New Yorker article titled “The Punisher,” accused the former Florida governor of going “all in on Schiavo” and running roughshod over Florida state law.
I suppose attacks like these go with the territory of what appears to be a presidential run by Mr. Bush. But it is telling that the attacks never tell my sister’s whole story, or identify the coalition of liberals and conservatives, believers and nonbelievers, that tried to prevent her slow death by dehydration.
The effort to protect Terri went all the way to the Supreme Court. One side comprised a pope (John Paul II), a president (George W. Bush) and a governor (Jeb Bush), as well as Democratic leaders (former Iowa Sen. Tom Harkin, for example), and many ordinary Americans who didn’t believe that providing food and water for a living human being with a brain injury could reasonably be regarded as extraordinary care.
On the other side stood Terri’s legal husband—then living with his fiancée and their two children—the vast majority of mainstream media outlets, America’s powerful “right-to-die” lobby and, sadly, one Florida circuit judge.
It was enough to make her dead. On March 18, 2005, Terri was no longer permitted to receive food or water, causing her to slowly starve and dehydrate, just as anyone would. Despite my family’s efforts—incredibly, we were denied even the right to put ice chips on her lips and tongue to relieve her torment—Terri died on March 31.
The case against Jeb Bush seems to be that he exceeded his constitutional authority and, having done so, revealed the kind of rogue president he would be if elected. Actually, he was following a duly passed Florida law later found to be unconstitutional by the Florida Supreme Court. That’s not acting unconstitutionally. Once the statute was invalidated, Mr. Bush followed the law.
The facts in Terri’s case were rarely presented to the American public in a clear, unbiased and nonideological manner, a pattern that has only grown more pronounced as time passed. Ten years later, the media still tread the same well-worn path, presenting a false paradigm of a supposedly loving husband versus interfering theocrats.
This is a good opportunity to set the record straight about what the governor was legally permitted to do and what he actually did.
Terri was a live human being who had a brain injury. She was minimally conscious. But contrary to many media reports, her autopsy did not prove that she was in a “persistent vegetative state,” or PVS. To that question, several neurologists submitted affidavits to the court and were willing to testify that Terri was not, in fact, unconscious or in a PVS. Among those neurologists was the widely respected Dr. William P. Cheshire, who examined Terri before her death. They were, however, denied the opportunity to testify by the now retired Circuit Court Judge George Greer because their testimony was deemed new evidence. Clearly, they should have been allowed to testify in a case involving life and death.
These physicians were also prepared to document cases in which brain-injured patients became, with therapy, capable of moderate levels of consciousness and, in some instances, regained some level of functionality. There are also cases on record where such patients regained full functionality and today live active, independent lives.
So what did Gov. Bush actually do that was supposedly so egregious? Under what was known as “Terri’s Law,” he was legally permitted to seek “to clarify the facts” in a court case that appeared to many to have clearly defective judicial orders and irregularities. That is what he did—for which he was immediately and viciously attacked.
Having clarified the facts, and having been advised that without food and water Terri would slowly starve and dehydrate to death, he sought as governor to have her case “reviewed”—very much as he had been asked to do, and did, in capital-punishment cases.
This same motive prompted the U.S. Congress to get involved. Their reasoning was that if mass murderers like Ted Bundy and John Wayne Gacy could have their cases thoroughly reviewed by federal courts in cases that had run through the normal appeals process at the state level—surely an innocent, brain-injured woman facing a death sentence ought to be given the same basic right. This view received unanimous consent in the Senate, including from then-Sen.Barack Obama , which he later characterized as a “mistake.”
Today, a scant 10 years later, more and more families are finding themselves in the same situation that our family faced. Life-and-death decisions for their loved ones are being taken out of their hands and being put in the hands of health-care professionals and hospital-review boards. These families are frightened and, increasingly, voiceless. They know their loved ones are alive, even if minimally conscious, and deserve to live. With the proper therapeutic protocols, the condition of these persons can and in some cases does indeed improve over time.
Many family members are willing to take on the responsibility of care and the long, hard work of rehabbing their loved ones to higher levels of consciousness. All they ask is for the right to do so. All Jeb Bush did was try to help win that right for me and my family. Sadly for us, and for Terri, he couldn’t.
Mr. Schindler is the executive director of the Terri Schiavo Life & Hope Network, which works to protect the lives of the medically vulnerable and disabled from the threat of euthanasia.
